Woodbury family's 'special little baby' afflicted with terminal condition
Lewann Babler couldn’t hold back tears as she spoke about her 5-month-old’s terminal form of dwarfism that has only affected 100 births in the United States.
The Woodbury mom with her husband Ryan kept their son’s condition to themselves for a while.
Until it weighed so heavily on the River Falls, Wis. natives that they decided to share with family and friends what “Rhizomelic Chondrodysplasia Punctata” is.
The disease is so rare, with one in 100,000 people diagnosed worldwide, but what’s frustrating to the couple even more is that every single case is unique in its own way.
Lewann, 29, had the textbook definition of a healthy pregnancy followed by what she described as the perfect, un-medicated, natural labor in less than five hours.
“When he was born, we had no idea,” she said. “It was the most amazing, easy, healthy pregnancy.”
Leo was born with shortened upper arms and shortened upper legs. He’s experiencing growth deficiencies and cataracts, though not the heart and lung issues that some other children with the disease may have.
Since his birth, he’s had a total of six surgeries including four eye surgeries to remove the cataracts and two gastrointestinal surgeries to install a feeding tube.
Leo has had more interaction with operating tables and medical equipment than soft and plushy toys. He was rushed to the neonatal intensive care unit quickly after birth when doctors noticed his muscles and connective tissues in the shoulders, knees, elbows and hips were tensed up.
“He was all flexed,” Lewann recalled. “He didn’t have any mobility.”
Leo wasn’t immediately diagnosed with Rhizomelic Chondrodysplasia Punctata, his parents said, but the doctors knew he had some type of dwarfism.
“It was just the most difficult thing,” Lewann said, “literally after the best day of my life…”
Having to take in the news that her first-born son would live with growth deficiencies and physical hardships, in addition to hearing the word “terminal” wasn’t easy.
The new parents had to mourn the loss of the life they had planned. They realize now how much simple things like going to the grocery store or running errands with children can be taken for granted.
But their hopes and dreams for Leo aren’t completely shattered.
“I hope Leo can see well. I hope he can run around,” Lewann said. “I hope he’ll be able to do things other kids can do.”
After hearing some good news from a neurologist in October, the Bablers continue to take everything they hear about the disease with a grain of salt.
“There is more severe cases and there is more mild cases,” Ryan said. “Because of how rare it is, we don’t know what his potential is.”
The family is optimistic and continues to try all kinds of alternative therapies.
Lewann, a massage therapist, has been trying music therapy, aroma therapy and water therapy, which have all been enjoyable for Leo.
“He’s more aware,” she said of Leo under water, “all this information is coming into his body … he’s getting all kinds of neurological input.”
The couple had kept the news from family and friends at first to try and avoid sympathy looks from people and because they didn’t want Leo to be treated differently.
But once they shared the news, they were overwhelmed by the amount of support they received, Lewann said, getting teary-eyed thinking about it.
“It was weighing on us, too. You’re living in your own little world,” she said. “People were worried about him but they didn’t know the severity of it.”
The Bablers’ family and friends are holding a benefit for Leo Saturday, Nov. 15 in Hammond, Wis. and have launched a fundraising campaign to help with medical expenses at http://www.gofundme.com/cfgmts.
“He’s our special little baby,” Lewann said.